Voices of PKD Blog
April 23, 2019

Monica Kee, Penetanguishene ON | Voices of PKD

Mary Ellen, Mother (Brigitte), Monica and Martha

I'll start off with some background history of our family and then move on to how PKD has impacted our family.

My parents emigrated from the Netherlands in 1952 when my oldest sister Martha was 1 year old. Our mother had three children at that time, Martha being the youngest. Theo and Al were 3 and 2, respectively. Once in Canada, they had four more children, Frank, John, Mary Ellen and myself, Monica.

At Christmas time in 1995, I noticed that my sister's color was "off" and she said she had been experiencing some kidney and bladder issues, but was seeing a doctor so hopefully everything would turn out OK. At the time, our father was quite ill. He passed away in the spring of 1996. That is when we learned that Martha had kidney disease. At that time, we were not aware of the full impact it would have on her life. Sometime after that, she started dialysis and while she looked a whole lot better, it had a huge impact on her life. Three times a week, she had to frequent the hospital for dialysis. She was "lucky" in that she lived in Oshawa, and their hospital had a dialysis unit. In addition, their cottage was in Dorset and the Lion's Club has a camp there where she could access dialysis treatments during their stays.

I think it was a year or so after starting dialysis that she told us that she had polycystic kidney disease and needed a transplant. She had not had an easy time during dialysis. She was hospitalized on a couple of occasions with infections, one of which affected her heart. Our mother immediately said she would donate her kidney but at 78 years old, it was thought she might not be the best candidate.

Monica (live organ donor), Rachel (live organ donor) and Mary Ellen (live organ donor)

My sister Mary Ellen and I both said that we would donate. Mary Ellen was living out of the province at the time (stationed in Edmonton with the Canadian Armed Forces), so I contacted Maureen at St. Michael's Hospital and started the process. I was informed that a surgeon, who knew nothing of my sister’s case, only that she needed a kidney, would assess me. The surgeon assigned to me was only concerned about how donation would affect my health, in order to be impartial. I live about 2 hours from Toronto, so there were travel expenses involved. These are all covered, and with the help of the Transplant Coordinator, I was not affected financially. Soon into the assessment process however, I was told that I was not a suitable candidate.

My sister Mary Ellen then started the process and was a perfectly suitable candidate. At some point in the process, the surgeon said she was an "anatomically perfect candidate for donation", which she likes to shorten to "anatomically perfect". Prior to the surgery in 2001, Mary Ellen retired from the Armed Forces and moved back to Ontario. The surgery went perfectly, and the new kidney started working as soon as the transplant was completed.

The surgery was done laparoscopically, which means that Mary Ellen only has a 4-inch scar on her lower abdomen, as well 3 or 4 other small scars. Although the kidney is located more toward the back of the body, the surgeon is able to access it through the abdomen, making the surgery minimally invasive. This makes the donor's recovery actually very easy. Mary Ellen was out of bed the same day, and visiting our sister whose hospital room was just down the hall. She was back at home within a week, and recovered perfectly. It has been 17 years since she donated, and there have been absolutely no complications. Her remaining kidney works perfectly, and the kidney that she gave to our sister is also working perfectly. Martha is required to take a lot of medication on an ongoing basis. Mary Ellen just lives her life normally.

During the process between Martha starting dialysis and receiving our sister's kidney, we learned a lot about PKD. She told us that it was an inherited disease, but for some reason just showed up in her. There was no prior history of this disease in our family. Martha told us that her kids Jennifer and Dan had a 50/50 chance of inheriting the disease, which could shut down their kidneys over time and cause them to need transplants too.

Rachel (live organ donor) and Dan (organ recipient)

Somewhere around 2011-12, we learned that Jennifer and Dan also had PKD. Daniel's case was slightly more advanced than Jennifer’s, and he was going to have to start dialysis soon. Dan's cousin on his father's side started the process to see if he could donate, but turned out to be unsuitable. My daughter Rachel, who was going to school in Toronto at the time, volunteered to start the process. The Transplant Coordinator was extremely helpful to Rachel, assisting with booking appointments, explaining things, and coordinating all the tests. There were blood tests, an ultrasound, blood pressure monitoring, etc. Rachel has a seizure disorder, and we were a bit concerned that this would make her not suitable, but the doctor's assessed that this would not be an issue. Although Rachel and Dan were not the same blood type, we were told that Dan could undergo some sort of treatment that would enable him to receive her kidney without rejection. Their surgery was scheduled for May 2013. It also went perfectly. St. Michael's Hospital staff treated her well. Again, a laparoscopic procedure, a small scar on the lower abdomen and 5 years later, her kidney is working fine. She had the surgery on Wednesday and was on her way home on Friday. Her other cousin got married on Saturday, and Rachel was able to attend the ceremony (we skipped the party). Rachel was finished school, and was able to return to her work in retail within 4 weeks. Dan will take medication for the rest of his life to prevent rejection, but was able to return to work as a boilermaker. He works full time, owns his house and lives his life the way he wants to, with a healthy kidney.

The kind of dialysis my sister, niece and nephew were required to have requires a shunt to be placed into their forearms in order to access the vein easily. Jennifer's surgeon at the hospital in Hamilton made a number of attempts to create shunts in her forearms, but were unsuccessful. Because of this, although her disease had not yet progressed to the point where she needed dialysis, she did need a transplant. I came forward and offered. Again, I went through the assessment process, this time in Hamilton. The Transplant Coordinator there was very helpful in organizing the process and helping me through it, although after watching and assisting Rachel with her donation, I was quite familiar with it. Our surgery went ahead in March 2014. Again, textbook recovery. I was home in less than a week, off pain medications within days after that and returned to work without issue. Again, we do not have compatible blood types, but Jennifer underwent treatment pre-surgery to prevent rejection. She also has to take medication for the rest of her life.

Because Mary Ellen donated her kidney to Martha, Martha gets to enjoy her three grandchildren. Martha is enjoying her retirement instead of being tied to a dialysis unit three times a week. For a few years after the surgery, my mother insisted on having a family celebration to acknowledge the gift between sisters.

Rachel's donation to her cousin Dan was amazing, though she does not consider it so. When we talk about it, she often says that she does not see it as a big deal. She has two kidneys, only needs one. He needed one. It literally does not affect her life at all on a day-to-day basis.

Jennifer and Martha (organ recipients)

My donation to Jennifer means that she can continue to be a loving mother to three beautiful children. She can work full time and share her life with her loving and devoted partner. My life was not affected by my donation. It is literally the easiest surgery I have ever had.

Our surgeries have made us closer as a family. It is fun when someone realizes that their partner kidney has entered the room. We joke and say that we're nice to each other because you never know when you're going to need a kidney from one of our siblings. I'm glad that my mother still has her daughter and that she doesn't have to worry so much about two of her 10 grand-kids.

I love our family and how willing we are to help each other. I really hope that people understand how simple it can be to be a living donor.

My one worry is that our family' is not done with PKD. Jennifer has three kids, Emma who is 22 years old, Matthew and Daniel who are approaching adulthood. Chances are good that there will be more kidneys needed. My mother worries about her great grandchildren now. At 95 years old, she still says that she would give a kidney if she could but they won't let her. I hope that family members will come through for those three kids if or when they need a kidney, or research will make it so we don't have to think about it.

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